Our son Matt has brought such joy to us and through him we have learnt so many things about ourselves and life. He has a rare genetic syndrome called Rubinstein-Taybi Syndrome. This blog is where we process the things we have learnt, where we share our challenges and pains, and where we celebrate small victories.

Friday, February 24, 2012

I have just finished reading “The Boy in the Moon” by Ian Brown. Ian is the father of Walker who was born with a genetic syndrome called CFC. I won’t begin to explain what that all entails, the book does that well enough. The book is about Ian’s journey as a parent of a child with severe health and development issues. Being a journalist and a seasoned writer gives Ian the ability to write both from a very personal perspective whilst at the same time looking upon the matter from an objective distance.

Walker’s needs are very taxing on the family, emotionally, physically and financially. Ian descriptions of their struggles made me ache for him, his words bringing me into his tiredness and exhaustion. He shares about the dark times in his marriage and in his own private thought world. I appreciate such candour as often parents of special needs kids are so focussed on the positive, as this is how they cope with the life altering gift. But it does mean that others can get the impression that things are easier than they seem. I think I might sometimes fall into that trap in my blogging.

“The strange thing was that all this darkness could be relieved by a few pinpoints of light. A reaction alone was notable; a smile or one of his glee sprees charmed my afternoon.”

This quote from page 46 demonstrates that his book, although brutally honest, isn’t a pity-party, nor does it only focus on the struggles. His writing also invites the reader into those precious, glorious moments of connection with Walker, those moments that breathe life and purpose; and that inspire gratitude in one’s own life.

In addition to telling his story, he also shares his observations and critique of the medical system, genetics, government services, and society – obviously he is speaking from real-life experience, and unafraid to question the status quo. One interesting thought

“Until recently, no-one – certainly no part of the government-funding apparatus – was willing to admit that a child could be loved and still be too difficult to be cared for by his or her parents. Because until twenty years ago, children this medically complex didn’t exist. They didn’t survive. High-tech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level” page 95-96.

In seeking to understand his son better he explores all that genetics and medicine can give him. Whilst at the same time he is also trying to determine if Walker has a sense of self, grappling with what life Walker could live, what would give it meaning. A hard goal to achieve, especially Ian is an atheist, and many of the more spiritual explanations don’t connect with his world view. He does reach one profound conclusion on page 234

“The purpose of intellectually disabled people like Walker might be to free us from the stark emptiness of the survival of the fittest”

Ian often refers to his wife, but less often shares her thoughts and perspectives. He did quote her reaction to the occasion when, strongly encouraged by someone, she takes Walker to a Shaman. I love the way she reflects on the experience.

“It was a huge relief to me, “Johannah said. “Because for the first time, the only time, someone wasn’t trying to fix him. They were just describing him. There was no judgement or fear. It was just very accepting. And I do think it was a turning point for me. Instead of trying to fix Walker or make him better or diagnose him or see what was causing his state, it was just what and who he is. This is what he is doing. It wasn’t a triumph or tragedy. It just was.” (page 111)

I can connect to that sense of peace one gets when one sees one’s child for what he is: when the yearning for the next milestone has ceased, when you have stopped comparing him to your neighbour’s child, when you are no longer trying to make him something he is not.

Ian shares about joining an internet-based support group aka listserv, and his description of the experience made me laugh in that it was so familiar – the various types of people and responses. He spends time and energy visiting various families whose child has the same syndrome. He introduces us to these children and reflects on what it means for him and Walker. One belief held by some of the parents he meets is the notion that God has chosen to give this special child to this specific parent, that the child is some time of heavenly gift. I appreciate his honest reaction to this way of thinking:

“I understood that impulse: Walker had given my life shape, possibly even meaning. But Walker had also made our lives hell. On the hellish days the mawkish sermonising about angels and specialness felt like rank self-delusion, the work of anxious cheerleaders desperate to justify themselves to a cynical high school. Disability is no different from politics or even college football: it divides and politicizes people according to their need, simplifying dark and unanswerable experiences into a dependable, reassuring stance. But the details of Walker’s life belied any certain path.” (pages 135-136)

I must confess, that even though I love Jesus and read the same bible as other Christians, I do not believe that God intentionally decides to inflict a chromosome disorder on a child, and then gives this child to a specific family as part of a greater, cosmic plan. Nothing in the life and person of Jesus teaches me that this is what I should expect from God. I am reading an interesting book on this topic and so will spare you a theological explanation here. But I must say, although thinking that God is all in control, like a giant puppet master, and that all that happens to us in life is God’s will may bring some comfort to some Christians, I believe it makes it really difficult for those who have experienced the rough side of our fallen world to have an intimate relationship with God. But more of that in another post.

My final comment on this book. When contemplating Walker’s care home, as well as his future, Johannah’s deep longing for him are expressed here: “As long as someone loves him every day” (page 184). I don’t think about Matt’s future that often, by future I mean what will happen to Matt when Lloyd and I have passed on. It is too scary, and as I don’t have much control over it from where I am now, I choose to leave that question in the future for now. But when my heart does wonder down that road, then Johannah’s words echo my deepest prayers for Matt – God, as long as someone loves him every day.

I would recommend this book to parents of children who have kids with special needs – the honest realistic reflection is so refreshing, and affirms you that you are not the only one struggling, and that you are not alone. I would also recommend this book to friends of families of children with special needs – it gives wonderful insight into a topic that is often avoided. Therapists, teachers, medical professionals who engage with children with special needs and their parents will also find this book helpful in developing insight and empathy.

Sunday, February 19, 2012

I am thankful that sometimes they way I see the world isn’t always the big picture, it isn’t always the full story, it isn’t always the complete truth.

So we have been struggling with some of Matt’s actions (I was tempted to call it his behaviour but I don’t think it is a bad behaviour issue). Three things are combining to make Matt too physical with other children. On the one hand he has just discovered that children are fun to engage with – but with the speech delay it is easier to push, pull or prod than to find the right word and get it out in time before the other child moves on. Matt doesn’t know how strong he is, he doesn’t seem to be aware of how his roughness hurts other children- a life lesson still needs to be learned. Matt also seems to have some sensory need that draws him to physically touching, pinching and leaning on other children. I have analysed this from numerous angels and am convinced he is not trying to be malicious or intentionally hurtful.

This week I came to Matt’s class during morning circle ring to share some of Matt’s signs with his classmates. They were really receptive. On the other hand I saw Matt, overstimulated by being in close proximity to his friends, grabbing their arms, pinching their skin, leaning in on their laps – not all the time, but for enough time to make me very unsettled.

Very unsettled – I left wondering if I was expecting too much from Matt in this mainstream setting. Were his actions traumatising the other children, would they ever want to play with him? My mind was racing with possible solutions to help Matt contain himself during circle time, whilst still doubting our choice of schooling for Matt.

It is hard to summarise a whole week in a blog post with much happening in my heart and mind. So I will just skip to Friday and share two moments that took me by surprise, and made me realise that I only had one side of the story.

Moment 1:Before Matt’s class starts parents can hang out for 15 minutes or so while the kids explore and play. Usually Matt and I do an activity together. This morning he was enveloped by 5 other kids, eager to play. Soon they were doing an impromptu ring-a-rosies, followed by flying around like butterflies, then morphing into frogs they were jumping around the front of their classroom. Matt mostly following the other childrens’ lead, sometimes initiating a new movement which the others then followed. Laughter. Giggles. Talking to matt. Matt holding their hands. Matt playing with children who liked him.

Moment 2: Meeting with Matt’s teacher after school she tells me that, yes Matt’s disruptive actions continue during circle time but she has found that he is calmer if he sits next to her. The other problem that has now emerged is that a number of his classmates fight over who gets to sit next to Matt –so much so that she has now resorted to drawing up a roster!

Seemingly all my worrying about Matt’s anti-social actions are not pushing the other children away. Sure they don’t like it, and they tell him so (which is good as he needs to learn). But that is not all they see in Matt, they see a whole much more. And seemingly all the other parts of Matt have charmed them, so much so that they are willing to fight over who gets to sit next to him.

So I am learning to keep in mind the bigger picture, and not just obsess with the challenge that lay before me.

Thursday, February 16, 2012

The other day I brought my camera to Matt's school to take some photos to upload onto his iPad. And Matt took me on a tour of his school.

Matt in his classroom.

Matt's lovely teacher

The warm and friendly teacher assistant who keeps a special eye on Matt.

Matt has learnt how to swing on the rings. Mom is surprised.

Matt has conquored the tricky slide, where you have to climb under a beam to access it. A little bit of help is however always welcomed.

Hoola hooping, I am told, is a favourite activity.

The sandpit - a fantastic sensory place for Matt

Matt proudly showed me how bravely and quickly he climbed the rope climbing frame, only to get really nervous at the top. Neither his mom or Matt could figure out how to get that leg over the top. Something we both need to work on. Matt was carried to safety.

A favourite cushion - I am told Matt snuggles with it on a daily basis.

Wednesday, February 15, 2012

A hard article to read - but helpful in terms of raising some important issues around the social needs of children with special needs. Not sure what I think about it all yet - still gathering information and thoughts about this whole inclusion and integration concept vs special needs education.

My Child's Dream: To have friends
And then, in case you don't have time to read the comments in the above article. Someone posted a link the the blog post below. It brings hope so is worth a read.

Tuesday, February 7, 2012

I am just emerging from a dark couple of weeks. I shared in the previous blog post how emotionally draining I found the first few weeks of Matt's schooling to be. In addition to highlighting Matt's delays, it also highlighted how far we still need to go in terms of Matt's development - social maturity, fine motor skills - especially using his hands and fingers, communication, and much more. I think last year - when Matt was in a settled, safe space both here at home and in his play group - it was much easier to focus on the achievements and progress. Last year there were lots of celebrations in our home as Matt's speech slowly but consistently bubbled forth, and as he revealed his growing understanding of the world around him.

This new school environment - though very warm and embracing of Matt - has highlighted the "what still needs to be achieved" steps. A helpful metaphor...it feels like I have been climbing a big mountain for the last 5 years and I finally reached the top - as I stand at the top, ready to raise my arms in victory I happen to look up. Instead of seeing open skies, I see another mountain, a bigger mountain, a more treacherous looking mountain. And as I look down towards the path I have just finished climbing all these years, I don't see much of mountain, rather a small hill. My victory-arms fall to my sides, I exhale as the energy of what was supposed to be a great conquering moment feels more like an anticlimax. I don't feel like I have the capacity to keep climbing and despair sets in.

Fortunately in that place of dejection, my prayers for help were heard. I felt God whisper to my spirit that I should not stand alone, but rather reach out to others who are also climbing the mountain. And so two tearful emails were sent across cyberspace and great ocean divides to two inspiring women and mothers of precious RTS children. That act of reaching out, choosing not to stay isolated, allowed hope to be reborn in my heart. Their loving and wise responses added a greater measure of hope and reawakened my tenacity. With a heart now open to receive - God brought in other people across my path, most of them unknowingly, to speak words of encouragement to me.

Yes there is a giant mountain that needs to be climbed - it will only be conquered over years. But the vastness of this challenge no longer fills my vision. I have heeded good advice to rather focus my eyes on the immediate goals and the current joys. So Matt and I will picnic on this hill top, we will throw a ball, roll in the grass, and eat a snack - and then once again pick up our journey of walking up a mountain. Already I can see God placing some fellow climbers alongside us for the next part of the trip. I know I will be able to keep going.

Love

The Bible says that if we have not LOVE then we are nothing "If I speak in the tongues of men and of angels, but have not love, I am only a resounding gong or a clanging cymbal. If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but have not love, I am nothing. If I give all I possess to the poor and surrender my body to the flames, but have not love, I gain nothing." 1 Corinthians 13: 1-7

nothing nothingWe are nothing without LOVE

It does not say if we learn to crawl long after most children crawl we are nothing It does not say if we struggle to learn how to speak we are nothingIt does not say if we grow up dependent on others we are nothingNo it says if we have not LOVE then we are nothing

This is helping us to free ourselves from worrying about Matt's development.

Rather, our goal is to let Matthew know he is LOVEDAnd to help him unlock the deep well of LOVE that God has placed in his heart...For then he will have LOVE and he will be something

Followers

RTS in South Africa

Connect more with others who have family members with RTS. Find out more about what resources there are in South Africa. Visit the RTS South Africa website:http://www.rts-southafrica.weebly.com/